An opinion piece by content-for-parents editor Melanie Dimmitt
After months of working in our home, during one of her shifts, my five-year-old son’s support worker asked me a horrifying question: “Where is your toilet?” I directed her down the hall and to the left, mortified that I’d failed to relay this simple - yet crucial - detail within minutes of our meeting.
Welcoming a stranger into your family can be a disorientingly odd and awkward undertaking, in my defence. But this oversight made me wonder, what other information was I (unwittingly) withholding which might make this integration smoother for everyone involved?
In an effort to answer this question I’ve chatted with several disability support workers whose clients range from tots to teens. Here’s what they told me they’d like to know about your child, family and home, right upfront:
1. Your kid’s diagnosis (if they have one)
“Sometimes parents will tell you a lot about their child but won’t actually tell you a diagnosis. And that can make it difficult because after meeting with a person for the first time, I like to look up what condition they have so I can think of better ways to provide support or therapy for them. It’s also quite an awkward thing to bring up.”
2. What lights them up and calms them down
“A person’s interests are a really important thing to take on board, especially if you’re trying to do some therapy or teaching. It also helps to know potential triggers and solutions. Some of this is common sense, but sometimes the thing that works for the particular kid is, ‘you have to go and get them an ice block, right now.' Particularly if it’s a bit unusual, that’s handy to know.”
3. Your house rules
“It’s good to be briefed on the basics, like, should I take my shoes off at the door? But also the specifics. I have a client who is allowed to eat cake, but never sour lollies. Chocolate is fine, jelly beans are OK, but never sour lollies. It seems like a really arbitrary rule, to me, but it makes sense in their family, for whatever reason. And there was no way I was going to guess that.”
4. Boundaries around technology
“When is the child allowed to go on the iPad? When are they not? Do we have a timer for the electronics? Sometimes kids will try to take advantage of the fact that you don’t know, because you’re a new support worker coming in, so you think, maybe this is normal. And then the parents will come in and say, 'What are you doing on here?’ and all you can say is ‘Sorry!’”
5. The deal with toileting
“Just the other day I had a client who had to go to the bathroom while I was there. He locked himself in, unrolled an entire roll of toilet paper and stuck it in the toilet before he came out. When his parents came home they said that was totally normal, but I hadn’t been given any guidance around whether I should monitor him or if they prefer him to have privacy.”
6. Physical touch
“I’ve got a couple of teenage clients who have, only in the fairly recent past, become quite a lot more touchy and cuddly. It’s been fine - I’ve spoken to the parents about it - but if I’d had a heads-up, ahead of time, that ‘By the way, they’re a total cuddler’, or ‘It’s really unusual for them to be that touchy with a support worker’, it would have made things more comfortable.”
7. Access to refreshments
“It’s always good when parents tell you straight up, ‘Help yourself to tea and coffee.’ Or, ‘You’re welcome to anything in the pantry.’ If they don’t say anything, I assume it’s all off limits and bring my own water bottle. If it’s only a two-hour shift, no one’s going to get upset if you have a glass of water, but if you make yourself a sandwich, it might be a little bit too familiar!”
8. The deal with breaks
“If you’re doing an eight-hour shift, you should be able to have a half-hour lunch break, but often the child or person might need full-time supervision. So, do you get an extra half hour pay to cover that? Or is there a time that the child can be occupied, and you can have a bit of a break? Sometimes you need a mental break - you just want to eat and go on your phone and check a few messages - but you don’t know whether you can or not. It’s good to get clear on this.”
9. School arrangements
“I have one client who goes to school three days a week but only for an hour at a time. That's a really important thing to know because sometimes he’ll get really stressed if we talk about school. Otherwise you might just walk in and ask, how was school today? And it could upset them.”
10. Your family dynamic
“If the parents are divorced and it’s amicable, that’s really different to if they’re divorced and it’s not amicable. Or, if they’ve got a sibling who has their own stuff going on, that will affect the person you’re working with, too. We need to know about this stuff, as we might need to debrief with our client or support them in understanding what’s going on with the rest of the family.”
Not forgetting directions to the toilet (like I did) and other rooms your kid’s support worker needs to be aware of, having these conversations early on will make everyone feel more at home.
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Melanie Dimmitt
Melanie Dimmitt is a freelance journalist, author and broadcaster. Since her debut book, Special, was published by Ventura Press in 2019, Melanie has written, spoken, podcasted and advocated far and wide for disability families. Creator and host of the award-winning NDIS Know-how and Tubie Talks podcasts, Melanie also publishes an annual magazine, The Blend, for the tube-feeding community.